Background. Cystic fibrosis (CF) is the most common inherited disease of childhood. Caring for a child with CF is stressful and this has implications for the main carer, the parental relationship, well siblings, family functioning as well as the affected child.
Aim. This study aimed to explore current stresses and coping strategies used by mothers and to identify roles and strategies that nursing professionals could extend or adopt to support them and families of children with CF.
Method. Semi-structured interviews were carried out with 17 mothers of children with CF who attended the regional cystic fibrosis hospital clinic. Interviews were analysed using the Framework method of analysis.
Findings. The study suggests that major stresses for many mothers are feeling in the middle in terms of decision-making particularly concerning the genetic implications of CF, the burden of responsibility for parenting a child with a chronic illness, and coming to terms with a personal change in identity. The most commonly used coping strategy was seeking support from others including nursing professionals. Relationships with health professionals in secondary care were generally positive, with nurses often the first people mothers turned to when they had concerns and also key in interpreting medical information. Relationships with primary care health professionals appeared to be more limited with a role reversal described by some mothers who felt it their responsibility to educate and inform primary care professionals about CF.
Conclusions. This study suggests that nursing professionals in primary and secondary care need to look beyond the care of the child to the needs of the mother. It provides evidence to suggest that nursing professionals in primary and secondary care have a number of important roles to play as holders of hope, bridge builders and in providing continuity of care for such families. It also suggests strategies to strengthen nurse–patient relationship.